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I've joined the ZERO club!!

Posted , 16 users are following.

FlipDover_Aust
FlipDover_Aust

Hi Everyone!

Just a quick one to let you know it's possible to join the Zero Club - albeit with help of Tocilizumab (Actemra).

I can't tell you how much better I feel off the pred - right down to the last .5mg I still had side effects such as an increased appetite, brain fog, lethargy, etc.

It took nearly a year to get off pred after starting Actemra, but well worth it. Two weeks after my last dose I feel like I have my life back, even though I still have PMR. I'm still a bit stiff, but I have no pain. I have more energy. I eat half what I used to and I am no longer drinking too much because I'm depressed. Pred has a lot to answer for!

I'm injecting Actemra weekly, but the rheumy has mentioned going off it as well early next year - which will be the real test to see if PMR comes screaming back. I've told him I'm not keen to experiment!

 

2 likes, 52 replies

52 Replies

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  • Kassiebeetle
    Kassiebeetle FlipDover_Aust

    Posted

    Congratulations FlipDover. How great for you. I assume by your name that you live in Australia. How long have you been on the Actemra. Thanks Kathy.

     

    • FlipDover_Aust
      FlipDover_Aust Kassiebeetle

      Posted

      Hi Kassiebeetle,

      yup, I live in Canberra, which is Australia's capital city. It's 3 hours south of Sydney.

      I started on Actemra in November last year - so about 11 months ago. I was on 10mg pred and 25mg of MXT at the time.

  • Oregonjohn-UK
    Oregonjohn-UK FlipDover_Aust

    Posted

    Well done Flip and a very warm welcome to Club Zero.  I'm coming up to nine months and like you feel soo.. much better and the old head is a lot clearer.  Don't give up exercising as the muscles take a bit longer to get back into were they should be - keep walking!!   I made 14 miles one day in April whilst I was in Malta and still am walking 4/5 miles each day (well not all days!!) it has left me with a cateract in my right eye but not to the point were it's fully affecting my eyesight but it might have happened anyway dispite PMR and the preds.  Keep well and moving.  John

    • FlipDover_Aust
      FlipDover_Aust Oregonjohn-UK

      Posted

      Interestingly, walking is one of the things I really struggle with. I'm so incredibly stiff in the hips and back. And my feet hurt because I'm so incredibly FAT! lol

      It's a bit of a catch 22 - I'm fat so I don't walk, I don't walk so I'm fat. lol

  • susan29426
    susan29426 FlipDover_Aust

    Posted

    Thank you for the words of encouragement. I'm on my second month of Actemra. Getting monthly infusions, and have been able to drop the prednisone 2.5 mg each month, bringing me to 10 mg. I still have significant shoulder pain, but my inflammation numbers, which have been through the roof, are now in the lower end of the normal range. I had been unable to get below 13.5 mg even though I was using the slow method recommended here. Am hoping for a lessening of the pain. When did yours go away? My rheumatologist told me I might have to be on this for 2 years. She said relapses are more common within that period.

     

    • FlipDover_Aust
      FlipDover_Aust susan29426

      Posted

      Actemra works by stopping the production of the inflammation in the liver, so your PMR is probably still quite active despite the CRP numbers going down (that's not the technical explanation!).

      I'm wondering how long you've had PMR - I had had it for two years before starting on Actemra, and I wonder if it was already starting to wane a little.

      I did ask the Rheumy how I'd know if I'd gone into remission given how well I feel on Actemra. That's when he mentioned slowly going off it next year.

    • susan29426
      susan29426 FlipDover_Aust

      Posted

      I've had PMR about two years. Haven't seen any signs it's starting to wane, but I also have osteoarthritis in my shoulders, and don't ever know which one is causing the pain. Please keep us apprised of your progress, and I'll do the same.

  • kathy67492
    kathy67492 FlipDover_Aust

    Posted

    I surely hope to write this exact same letter on this forum by next Spring! First, Congratulations for your success with getting off the prednisone🍾🌈 I have had 5 infusions, once a month, of Actemra and I too feel really good. I still can over due though, but can recover in a day. If I do too much and don't rest some I will have aches and "buzzing" in my PMR spots...upper arms, goin, feet. I have reduced 1m a month...from 8m in June to 3m now. I feel like I can feel something (good) from the quick withdrawal of the prednisone. I don't think I will mind staying on the Actemra for a spell, as long as there are not any side effects. his switching to Actemra in order to get off prednisone is an interesting concept....hope the ability of the Actemra to "block" the iL6 causing the inflammation will be permanent...???? I am so happy for you. I feel so much better too, but I am afraid to mention it to family & friends...partly because I remain guarded about how much I can do. I have remained active throughout, except for the first couple of months of PMR and I am making progress...walking further, more stamina...harder tennis game (then rest!).  Please continue to let us know how you are doing😀

    You must be a lot younger than my 70 years?...getting one injectible a week? I get one infusion a month....and when I start the injectibles (soon I hope, for travel) I will get one injectible (162ml) every two weeks.

    • FlipDover_Aust
      FlipDover_Aust kathy67492

      Posted

      I inject 162ml every week. So much easier than going to the hospital for an infusion every month and I don't seem to have it 'wear off' like the other person I know who's on the monthly infusions.

      And yes, I'm a bit younger - just turned 54! Got PMR just after I turned 51. So quite a young victim!

    • kathy67492
      kathy67492 FlipDover_Aust

      Posted

      I wonder how the dose for the Actemra is determined. I think one 162ml injectible is good up to 220 lbs. There is a woman on the other forum who is in her 50s and also takes an injection every week, but I do not know the dose. I am about a week out from my 6th infusion and I am "looking for it" because of fatigue. I will be interested to see if the injectibles work better....hope to start them in November so that I can travel. Also heard that the sooner you go to the Actemra after the start, the better...?

      so glad you are doing so well😊

    • EileenH
      EileenH kathy67492

      Posted

      In RA they say this:

      "SC injection

      Weight <100 kg: 162 mg SC every other week, followed by an increase to every week based on clinical response

      Weight =100 kg: 162 mg SC every week"

      But for GCA they say 

      "Indicated for treatment of giant cell arteritis (GCA) in adults

      162 mg SC once weekly in combination with a tapering course of glucocorticoids

      Based on clinical considerations, may consider administering 162 mg SC every other week in combination with a tapering course of glucocorticoids

      May be used alone following discontinuation of glucocorticoids (eg, interruption of dosing may be needed for management of dose-related laboratory abnormalities, IV administration is not approved for GCA)"

  • Anhaga
    Anhaga FlipDover_Aust

    Posted

    Has it really been almost a year? Time flies. So happy for you that the tocilizumab has worked. 😄

    • FlipDover_Aust
      FlipDover_Aust Anhaga

      Posted

      #iknowright! So quick considering how slow the first two years dragged along.
  • mjhollywood
    mjhollywood FlipDover_Aust

    Posted

    So happy to hear that I just start  my first shot was last week.    Still on pred.  But can't wait to the day I am off it!!!!!  

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